All posts for the month July, 2016

Last few weeks have been very hard for Robert and for everybody around. Robert has been suffering from all kinds of skin rashes with inflammation and/or secondary infections. From head to toes coming and going in circles. As soon as one part of his body gets better, the other part becomes affected. To make it worse, I have been unable to secure an appointment with a dermatologist despite trying almost every day.

Such condition makes Robert much more irritable, anxious, impatient, and, worst of all, rigid in his way of assuring that his surrounding remains unchanged and that the ways of doing things by him and by EVERYBODY around remain the same all the time.

His ears and nose might be itching but it doesn’t help that he constantly pats his ears and cheeks in quick, repetitive movements or strikes his nose with all the fingers, one after the other, as fast as if he were playing short notes on one key of the piano. Maybe he does that because the ears and the nose itch. But maybe they itch because he strikes them many times a day. Then there are sounds of his distress and repetitive demands presented in never-ending crescendo when we try to ignore them because we cannot fulfill them.

Although he relatively calmly survived 6 doctors’ visits in the last month, their sheer number and the lack of meaningful improvement didn’t help to put everything back to normal. Whatever that normal might be.

And yet almost every day, there is the time when everything seems to fall back into place. One or two hours of learning together.

A page from Saxon Math

A page from Math U See

A text from Horizon Reading to Learn

Two pages from workbook Human Body

A few pages of practicing talking from Fun Deck and Do

Our time of sanity, calm, and balance. Even our old cat Amber wants to bask in the ambience of that time and that place. She jumps on the table, spreads herself two feet away from us and half listens, half daydreams.

I don’t know if Robert would be ever able to use ten percent of what he is learning. I know however, that this daily routine of teaching and learning let us survive the most chaotic and difficult times without forgetting who we are and what we – Robert and I – are capable of. This short time of studying together pulls us up from despair and doubts and let us regain our thoughtful human form one day at a time.

“No, no, no, no no.” Answers Robert between two bites of his cheese stuffed poblano pepper.

Years ago, such answer forced us to cancel the family trip to the beach. Not anymore. Now, Jan and I know that such answer means, “I don’t want to go now, because I am eating.” So, we have learned not to ask Robert if he would like to do something when he is busy doing something else. He might be putting away laundry or emptying dishwasher but as long as the job is not completed Robert will say, “No” to the most tempting alternative.

Of course, over the years, we have also learned to use a sentence of the form, ” After you finish…. we would….” Robert understands very well the concept of “after”. He also grasps the meaning of “if” phrase as the condition of doing something. Still, the next step which would require using “after” in the question (Would you like to go to the beach AFTER you finish eating?” ) seems not reached yet.

“No, no, no” remains Robert’s default answer to too many suggestions. To escape such rejection I have learned to give Robert a choice. Somehow, he feels obligated to demonstrate his preference even if both elements of the alternative don’t seem appealing.

It is much more difficult to understand the thinking process behind other “No” answers and consequently it is much harder to decide how to deal with such rejections. Not surprisingly, we, the parents, often encounter “no” when we try to widen Robert’s world and present him with new situations or new arrangements of old objects. “Robert’s “No” can mean, “We have never done that before.” or “This is not how the world works” or ” I would consider such change if I were not so scared” .

Using “No” as a way of assuring that the rigid limits of Robert’s world are not punctured, is leading to the most severe dilemma. Accepting “No” might lead to reinforcing the walls separating Robert from the freedom provided by wider perspectives on life, but rejecting it might lead to increased fear and distrust of others.

And of course, there are many situations in which Robert says. “no” for very valid reasons. Because, however, he doesn’t have words to explain them, those reasons are not understood and too often the “No” is considered just another symptom of Robert’s condition – be it autism or OCD and not of his much more insightful view of the circumstances.